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Whether you’ve been in the Valley for a long time, or you are new to the region, one thing is for sure: the landscape is rich in treasures. Our dry, flat region blossomed into one of the world’s greatest gardens that now supplies one-quarter of America’s food. This expansive land nestled between the scenic Sierra Nevada range and coastal mountains brimming with bountiful crops and orchards provides an array of fresh produce, nuts, cotton and grain. It’s also home to many thriving dairies, ranches and vineyards.

The Central Valley boasts a wide variety of other treasures: Enjoyable outdoor recreation; ancient giant sequoias; extensive wildlife; majestic waterfalls; long, winding country roads. From impressive wineries in the North Valley to oil production and country music in the South, the Valley shines with its unique brand of magnificence, talent and determination.

Children’s Hospital Central California is a treasure of its own. Some call it the “hidden jewel.” Founded 60 years ago, the only pediatric medical facility between Los Angeles and the Bay Area provides high-quality care in more than 40 specialties for children pre-birth to adulthood. At a time when children’s hospitals weren’t built in rural areas, the vision of five young mothers to create such a haven evolved into one of the top 10 children’s hospitals of its kind in the country and covers a 45,000-square-mile referral area.

Our greatest treasure of all, however, is
 our children.

It’s for them that we continue to ensure we have the best pediatric caregivers, advanced equipment and state-of-the-art facilities. It’s for them that the community continues to rally support and give generously to the Hospital.

But in the midst of our Valley’s abundance also lies great need. One-third of the children within the 10 counties we serve live in poverty, impacting their health, achievement and behavior.

As the leader of children’s healthcare in Central California, Children’s Hospital has a responsibility to uphold our mission to ensure every child has access to expert pediatric care. We have a responsibility to help ill children get back to being kids, and in many cases, restore their lives and futures.

The stories in this book exemplify the “treasure” we seek to care
for and protect.

Our sick and injured kids – strong and resilient, yet vulnerable – deserve our utmost attention and focus. Like any precious treasure, natural or manmade, we should never take them for granted. We need to keep investing in the present and future to continue providing them the best care for generations to come. After all, our children and their wellbeing is our most special – and enduring – treasure.

Click names to read stories.

Monique Naranjo

Amelia Shakespeare

Corva McCollom

Kaden Watson

Tyson Perez

Jace Williams

Juliana Bernacchi

Carson Genter

Anthony Thomas

Alison Garibay

 

 

 

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Juliana Bernacchi

SOLVING THE MYSTERY

After various doctor visits, 18-month-old Juliana Bernacchi’s increasing lethargy, fever and cough were puzzling. So late one night when the little girl’s fever spiked at 105 degrees and her white blood cell count soared to more than triple what it should be, her parents wanted the mystery solved more than ever.

“They told us her white blood cell count was over 34,000 and she needed to be transferred to Children’s Hospital,” recalls Rebecca Bernacchi, Juliana’s mom, referencing an emergency room visit near where they live in Hanford. “It was a slow-motion moment in time, when a chunk of me got taken away.”

En route to Children’s, “We thought, ‘Is this how it starts for people?’ When you know life is about to change forever?” says Ryan Bernacchi, Juliana’s dad. While children tolerate higher fevers compared to adults, significantly elevated white blood cell counts can sometimes be a symptom of a serious condition including leukemia, meningitis and autoimmune disease.

Looking for clues

Previously, Juliana had seen several different doctors to determine why she wasn’t feeling well. “They thought it’s probably allergies and gave her medication but there was no improvement,” says Ryan. “Juliana was a mystery.”

Dr. Robert Kezirian, a longtime pediatric emergency room physician at Children’s, just happens to like mysteries. “I love solving problems,” he says grinning. “I go by how the patient looks and their symptoms.”
Noticing Juliana’s dark undereye circles, swelling and difficult breathing, Dr. Kezirian immediately considered acute sinusitis as the diagnosis – but he wanted to be sure. Acute sinusitis causes the cavities around the nasal passages to inflame and enlarge. This interferes with drainage and causes mucus to build up. Persistent sinusitis can lead to serious infections and other complications.

A chest X-ray revealed nothing unusual but a CT scan targeting only Juliana’s tiny sinuses showed infection. As a result, Dr. Kezirian prescribed a different antibiotic to be administered in Juliana’s IV and her white blood cell count greatly decreased.

“‘Dr. K’ was so reassuring and calm,” says Rebecca, as Juliana, now 2, giggles while sitting on her lap at home. “You could tell he knew what he was doing.”

“Everyone was so nice – the doctors, nurses, technicians,” says Ryan. “Dr. K made us feel like we were his only patients, that he cared.”
While Dr. Kezirian wanted to continue Juliana on the medication, he sent the family home to rest and come back the next day. To avoid a second stick, he kept the IV in Juliana’s arm and showed her parents how to safely clean it. “It’s a new dynamic way of taking care of patients,” says Dr. Kezirian. “Not many hospitals do this. It’s a better option than admitting the child to the hospital.”

“It was easy to do,” says Ryan. “If it meant keeping that in or staying in the Hospital, we knew Juliana would be more comfortable in her own bed.”

The Bernacchis recognized other ways Children’s kid-friendly facility makes things easier for young patients, including CT scans offered with sedation, miniature blood-pressure cuffs, forehead swipe thermometers and colorful décor. “They even have things on TV in the rooms geared toward kids,” says Ryan.

Cracking the code

Juliana’s next round of antibiotic treatment the following day seemed to do the trick. “She was amazingly better, like a new person,” says Ryan.
Young children typically don’t get acute sinusitis because their sinuses aren’t very developed. “Juliana’s probably started with a viral infection,” says Dr. Kezirian.

Fortunately, Juliana’s condition was not terribly serious but at Children’s Hospital Central California, every child’s health issue is important. “This was an unresolved illness that caused discomfort,” says
Dr. Kezirian. “No condition is too small.”

 Tears in her eyes, Rebecca agrees: “When that chunk of me got taken away in that moment, I got it back at Children’s. We had our little girl again.”

“Dr. K cracked the code – he put all the pieces together,” says Ryan. “We’re very grateful.”

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Kaden Watson

A LONG ROAD TO RECOVERY

Kaden Watson’s family often refers to him as the “social one.” So when the energetic 6-year-old boy from Visalia didn’t do his characteristic “funny dance” after leaving church one Sunday and seemed consistently tired, they knew something was wrong.

What Kaden’s family didn’t know was that he had contracted valley fever, a flu-like and potentially deadly illness caused by inhaling airborne spores of a dirt-dwelling fungus. Endemic to our region, especially the South Valley, the hard-to-detect disease enveloped Kaden’s chest so severely that at one point his trachea narrowed to only 4 mm.

“Essentially Kaden was breathing through an opening the size of a straw,” says Dr. James McCarty, Children’s medical director, pediatric infectious disease, who has 25 years’ experience treating valley fever. “Kaden had the worst case of mediastinitis (tissue inflammation in the mid-chest) I’ve seen.”

Family desperate for answers

Kaden began not feeling well in January, at the height of the flu season. He had typical pneumonia symptoms – persistent cough, congestion and watery eyes that eventually included fever, vomiting and night sweats. But even after his local pediatrician prescribed two rounds of oral antibiotics, his health seemed to get worse, not better. A mass the size of a golf ball also developed at the base of his neck.

Desperate for answers, Kaden’s parents, Kandis and Phillip Watson, brought their little boy to Children’s Hospital Central California in February. “We wanted someone to tell us what was going on with our son,” says Kandis.

Seeing Kaden’s symptoms and imaging results, Dr. McCarty suspected valley fever, which a blood test confirmed. Kaden was admitted to Children’s to start aggressive treatment. To alleviate symptoms and ease Kaden’s restricted breathing, caregivers administered antifungal medication and steroids to shrink the inflammation in his chest and lymph nodes. He was transferred to the pediatric intensive care unit (PICU) for closer monitoring.

“Kaden was very ill – his face looked sucked in, pale, and he had this horrible cough,” recalls Kandis. “We were very scared for his life. Dr. McCarty said he stayed up all night worrying about Kaden. It made me feel great as a parent, that he cared so much.”

The combination of therapies worked, and Kaden became well enough to move from the PICU back to the floor. “The high-quality care in the PICU helped keep him alive,” says Dr. McCarty.

Recovery in sight

But as often the case with valley fever, Kaden’s road to recovery would be long. “What I tell patient families is they can’t think in terms of days and weeks, but in weeks and months,” says Dr. McCarty. “It’s a very stubborn disease.”

“I hated hearing that, but I appreciated Dr. McCarty’s honesty,” says Kandis. “He didn’t want to give us false hope.”

Kaden remained hospitalized at Children’s for six months, including another stay in the PICU when his condition escalated again.

“I prayed all the time, hoping one day everything would get better for him,” says Kandis.

The Watson family’s wish was answered. “I’m so excited,” says Kaden, the day before being discharged from the Hospital. “I’ll get to go with
my mom and dad, and sleep in my own bed.”

The ordeal hadn’t been easy – on Kaden or his family. “I was impressed how they pulled together and stayed strong,” says Dr. McCarty. “They relied heavily on their faith.”

“It was hard but we did it,” says Kandis. “Everyone at Children’s made it easier.”

Kandis noticed how Kaden grew from the experience as well. “He never complained once, about anything,” she says. “He’s only 6 but he’s matured through this.”

Based on his experience, Kaden had a suggestion for other ill children: “Stay strong, take your medication and get healthy!”

But while Kaden’s condition has greatly improved, some fungus still remains in his chest. With assistance from home care services, he continues to receive medication to treat the disease. In addition to seeing Dr. McCarty, he also receives follow-up care with pediatric nephrology and endocrinology specialists at Children’s to address effects from treatment.

“Kaden looks much better and has more energy,” says Kandis.

“Thankfully the worst is over.”

 

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Monique Naranjo

NEVER GIVE UP

Justin Bieber has millions of fans but to 9-year-old Monique Naranjo of Bakersfield, the mega teen heartthrob is more than a good-looking singer and actor – he’s like her lifeline.

Diagnosed with a rare congenital disorder in which she can’t walk and has trouble breathing, Monique’s greatest wish is to meet the worldwide sensation. In fact, this strong desire helped get her through a visit to Children’s Hospital Central California’s Emergency Department (ED) and undergo invasive procedures expected to prolong and improve her life.
“She could hardly breathe and had a fast heart rate,” recalls Sophia Naranjo, Monique’s mom, sitting near her daughter’s hospital bed. “She was giving up and didn’t want the doctors to do what they needed to do. Her dad and I told her she needs to get better, to not give up, so she can meet Justin Bieber. After that she started to get better.”
“Because I believed you!” says Monique sweetly, shortly after undergoing a tracheostomy during what became a two-month stay at Children’s.

Just the thought of meeting Bieber makes Monique’s face beam. “Some day I hope,” says the long, dark-haired girl, followed by a dreamy sigh. “He’s sooo cute.”

Journey to better health

Diagnosed with congenital arthrogryposis, characterized by multiple joint contractures throughout her body, Monique’s frail body is essentially folded in half. She also has associated restrictive lung disease, severe scoliosis and failure to thrive, meaning her physical growth is significantly less than her peers. Prior to the trach procedure, Monique used an oxygen mask and BiPap machine at home to help her breathe. “Monique’s quality of life was severely compromised,” says Dr. Reddivalam Sudhakar, medical director, pediatric pulmonology, at Children’s.

To help Monique enjoy life more, Dr. Sudhakar and other pediatric specialists at Children’s recommended she undergo a tracheostomy and obtain a gastrostomy tube. “We knew a trach was the only thing that would help her survive,” says Dr. Lauro Roberto, a pediatric pulmonologist at Children’s.

‘Bieber Fever’

At first Monique and her family resisted these invasive procedures. It was Monique’s obsession with the 18-year-old pop star that helped change their minds. “She wanted to move forward because of her goal to meet Justin Bieber,” says Dr. Sarah Smith, a pediatric hospitalist at Children’s. “Here’s this medically complex child, facing quality-of-life decisions, yet she’s like any other tween. It was very sweet.”

One glance around Monique’s room alone demonstrated the little girl’s admiration for Bieber. His name and image were plastered everywhere – from the T-shirt she wore, to the CDs, DVD movies and wall posters. His likeness with his trademark haircut even scrolled across her handheld Nintendo DSi.

“This patient has a fever alright,” says Dr. John Kinnison, a pediatric hospitalist at Children’s as he checked on Monique. “Severe Bieber fever that is!”

An extra special poster entitled “Never Say Never” hung behind her bed. Depicting Bieber’s documentary about his life, it read: “Find out what’s possible when you never give up.”

The poster was shipped overnight for Monique. How that happened is a story itself. Knowing Monique’s fascination for Bieber, Dr. Smith also knew Dr. Aaron Reitman, then a resident physician at Children’s, is personal friends with Jon Chu, who directed “Never Say Never.”

“I made a call and Jon sent some posters right away,” says Dr. Reitman, who also gave Monique a pair of purple 3D glasses from the “Never Say Never” premiere. “It’s great to make these kids smile.”

Dr. Sudhakar emphasized the value of patients having goals and activities. “People like Monique who have things they enjoy tend not to get depressed,” he says. “Depressed people give up. The non-depressed have a better immune system.”

Usually upbeat, Monique acknowledges living with her condition can be tough – but she makes the best of it. With supportive family, friends and caregivers, the friendly girl finds it difficult to carry a frown for long. One look at Bieber quickly lifts her mood anyway.

“Justin is very inspiring,” says Monique of his message for people to pursue their dreams.  Her eyes twinkle: “And I’m not going to give up on my dream!”

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Tyson Perez

BEATING THE ODDS

Weighing less than an unopened can of soda and one of the tiniest babies born in the world, Tyson Perez was fortunate just to survive. Going home from Children’s Hospital Central California six months later with no major complications was extraordinary.

The regional level III neonatal intensive care unit (NICU) at Children’s provides the highest level care in the Valley and some of the best outcomes in the country while treating the smallest and sickest babies. Born at 24 weeks’ gestation weighing only 12.7 ounces (360 grams), Tyson is living proof that even those as vulnerable as he was have a winning chance.

“Tyson is a highly unusual occurrence,” says Dr. Jeffrey Pietz, Children’s chief of newborn medicine. “He’s an amazing story.”
The little boy’s difficult journey began in the womb. An ultrasound at 19 weeks showed Tyson developing incorrectly. His mom’s diagnosis of preeclampsia, a potentially life-threatening disorder, compounded the situation.

Medical experts warned Katie Phaphon, 21, and Matt Perez, 24, of Fresno that even if their son survived an expected premature birth, he would most likely suffer severe developmental delays and impairments. The pregnancy could also put Katie’s health at risk. “Some suggested we terminate the baby,” says Katie sadly. “We didn’t want to make that choice.”

Maternal Fetal Center expertise

Referred to the Maternal Fetal Center at Children’s, Katie had access to perinatologists, physicians specially trained in high-risk pregnancies who collaborate with the mother’s obstetrician. Children’s partners with Saint Agnes Medical Center to provide a unique array of perinatal and pediatric services to help ensure the mom’s and baby’s healthy delivery and life.

Perinatologist Dr. Beni Adeniji obliged the parents’ request to take the pregnancy as far as possible unless Katie’s health became jeopardized. While Katie remained hospitalized at Saint Agnes, Dr. Adeniji focused on extending her pregnancy through medications and intense monitoring. He administered steroids to accelerate the baby’s lung development, but still, “It became a race against time,” he says.

But when Katie’s blood pressure soared and her platelets dropped rapidly, the baby was delivered by cesarean section and immediately transferred to Children’s NICU. “He was a beautiful sight,” says Matt of Tyson’s birth Aug. 30, 2011.

Specialized NICU treatment

Now a new race began. Of the 7,500 American babies born annually weighing less than a pound, only about 10 percent survive, even with advanced medical care. A baby with Tyson’s characteristics only stood a 7 percent chance of survival without severe impairment, according to national preterm birth outcome data.

Studies also indicate if babies born under 2 pounds 3 ounces (1,000 grams) graduate from the NICU without chronic lung disease, severe intraventricular hemorrhage, or severe retinopathy of prematurity, they have an 88 percent chance of a normal outcome at 18 months. Advanced therapies reduce complications for babies admitted to our NICU within three days of birth. “It’s vital these preemies receive specialized care within that time frame,” says Dr. Pietz. “Otherwise, it’s usually too late.”

Tyson beat the odds. Although he has some respiratory problems and retinopathy of prematurity, Dr. Pietz expects him to continue to improve. “The fact that Tyson survived and without any major comorbidities is remarkable,” he says.

Weighing 9 pounds by March 2012, Tyson was ready to leave Children’s. At home he utilizes oxygen to boost his breathing and feeds well. It’s too early to know how he will develop but specialists will monitor his progress for years.

“Excellent medical treatment before and after my pregnancy – and our faith – that’s what we believe saved him,” says Katie, cradling Tyson shortly before his Hospital discharge.

Tyson became part of a rare group when he went home. An online database of the world’s smallest surviving babies born less than a pound lists fewer than 140 babies since 1936. The voluntary submissions don’t represent all survivors.

Katie and Matt are proud of Tyson Matthew Perez and say his name fits him – but not in the way people might think. “He’s not named after the fighter Mike Tyson,” explains Matt. “Tyson means ‘high-spirited’ and Matthew, ‘gift of God.’ We think that’s perfect.”

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Alison Garibay

A PUZZLE TO WARM THE HEART

Albert and Sabrina Garibay delivered their firstborn July 22, 1999, and named her Alison. She gave no indication of the mystery she would become.

“They call me a puzzle,” says Alison with a grin. “That’s what I am, a puzzle.” A multidisciplinary team of doctors at Children’s Hospital Central California agrees.

The Garibays learned within four days of Alison’s birth that her heart had just one chamber and would need repair. Dr. Edwin Petrossian, Children’s medical director, cardiothoracic surgery, was confident he could delay surgery a few months.

“Children born with complex heart disease almost always require heart surgery as a newborn,” says pediatric cardiologist Dr. Kenneth Rouillard. “It’s rare for these infants to have the right balance of blood flows to their body and lungs like Alison had.” Because her heart could temporarily compensate for its deformity, surgery could wait until Alison was bigger.

“They told us for every malformation in Alison’s heart there was something reciprocal to offset it,” says Sabrina. If Alison is a puzzle, then the pieces were crafted by a Creator with a good plan. “It was God’s will. Ultimately it was all God’s will,” says Sabrina. “Each anomaly complements the other.”

Looking for missing pieces

When Alison reached 3 months, our cardiac team performed the first of three heart surgeries, but it wasn’t her first surgery. Alison also has heterotaxy syndrome, which means her organs are flipped midline. She required surgery as a 3-week-old to correct twisted intestines. Another heart surgery occurred after Alison turned 3, and the final heart surgery – the Fontan procedure – took place June 9, 2003, one month shy of her fourth birthday. At an age when preschoolers learn to count to 10, Alison could hold up four fingers not only to show how old she was, but also to indicate the number of surgeries she’d had.

In second grade Alison experienced severe back and abdominal pain. The Garibays turned again to Children’s Hospital. An ultrasound revealed her gallbladder, which was flipped, had gallstones and required removal. Alison would undergo her fifth surgery as a third-grader.
At age 9, Alison experienced trouble breathing. Her pediatrician prescribed an inhaler. “We took it everywhere and used it regularly, but it didn’t seem to help,” says Sabrina. Alison struggled with low energy – completely uncharacteristic of her personality – and began coughing up what would later be identified as “castings.”

“At first I thought I was coughing up my lung,” says Alison of the thick, rubbery-like mucus. Admitted to Children’s shortly after her 10th birthday with pneumonia, Alison brought along another puzzle. What caused the castings and what could be done about them?

Bringing the pieces together

Dr. Carl Owada, Children’s medical director of the cardiac catheterization laboratory, and Dr. Mary Anne Tablizo, a pediatric pulmonologist, each performed procedures that led to the diagnosis of plastic bronchitis, a rare side effect of the Fontan procedure.
The cardiothoracic surgery team at Children’s Hospital is part of the Northern California regional congenital heart program affiliated with Stanford University. Each year, surgeons in the program perform over 1,000 operations. Between 1997 and 2010, surgeons performed 126 Fontans at Children’s, but our doctors had never encountered plastic bronchitis until Alison.

Our multidisciplinary team of specialists faced a puzzling challenge. “Each one of us has our own specialty, our knowledge and skills,” says Dr. Rouillard. “We often have to come together with patients like Alison. That’s one of the things unique about working here. Everyone works collaboratively.”

Doctors prescribed an effective treatment regimen that incorporates a vest and a combination of medications. By inflating and deflating rapidly, the vest oscillates the chest wall with gentle pressure. Alison wears it twice a day for about an hour each time. “This seems to be working well for her,” says Dr. Tablizo.

“It’s not surprising with Alison,” says Dr. Rouillard, giving his patient much of the credit for her improved health. “She’s a fighter.”
No matter how impossible a puzzle may seem, its scattered pieces always fit together perfectly. The Garibays and doctors at Children’s Hospital Central California have worked tirelessly to solve the “Alison puzzle.” With patience, perseverance and prayer a beautiful picture has emerged – one of courage and hope.

 

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Amelia Shakespeare

BACK TO BEING A KID

Given her name, it’s not surprising Amelia Shakespeare has a flair for action and drama. She sings, does jujitsu and enjoys performing. But little would anyone know this lively 8-year-old underwent reconstructive urologic surgery, improving her quality of life and allowing her to get back to being a kid. 

“Amelia is very active and doesn’t let anything stop her,” says Robbie Shakespeare of her daughter. “The surgery made it possible for her to stay that way and do the things she likes to do.”

Choosing Children’s

Amelia’s difficulties with elimination weren’t obvious at first, especially since she looked healthy. She had constipation problems since she was a baby, but it wasn’t until about age 3 that she began experiencing recurring urinary tract infections and incontinence. “It was becoming worse,” says Robbie, whose family of six lives in Fremont. “She had fevers and even a seizure.”

Desperate for answers, Amelia’s pediatrician referred her to Children’s Hospital Central California for extensive testing and treatment. Dr. Devonna Kaji, Children’s medical director, pediatric urology, initially saw Amelia at the Modesto Pediatric Subspecialty Center. Operated by Specialty Medical Group in affiliation with Children’s, the Center provides care close to home for North Valley residents.
“We didn’t want to deal with the traffic in the Bay Area,” says Robbie. “And now, we wouldn’t go anywhere but Children’s Hospital.” Robbie was particularly impressed with the doctors’ and nurses’ pediatric expertise, the amount of personal attention they received, the facilities, and efforts to involve her in Amelia’s care. “Children’s has it all,” she says.

Amelia’s treatment plan at Children’s developed step by step. In addition to ongoing constipation, Dr. Kaji diagnosed Amelia with voiding dysfunction (her bladder leaked urine) and vesicoureteral reflux, or VUR  (urine from her bladder flowed abnormally backward into her kidneys). VUR, which occurs in about 1 percent of children, put Amelia at risk for kidney damage.

To fix the tubes that connect the bladder to the kidneys, Dr. Kaji performed ureteral reimplantation surgery. While this resolved the reflux, Amelia’s urinary incontinence continued and didn’t respond to standard medical therapy. A more comprehensive workup indicated the little girl had a neurogenic bladder, meaning the problem related to disease of the central nervous system or peripheral nerves that control urination.

Evaluating every option, Dr. Kaji consulted with
Dr. Gary Magram, Children’s medical director,
pediatric neurosurgery. An MRI scan showed a
congenital anomaly in Amelia’s lower spine.
Dr. Magram surgically removed the sacral cyst. “First we wanted to see if this intervention would alleviate symptoms of Amelia’s neurogenic bladder to avoid doing a bigger procedure,” says Dr. Magram.
The surgery went well but Amelia’s urinary incontinence as well as constipation continued. “Dr. Kaji and Dr. Magram explained everything every step of the way,” says Robbie. “They left no stone unturned.”

Major surgery a last resort

Complex reconstructive surgery seemed the best solution to Amelia’s problem. Dr. Kaji completed a continent urinary diversion procedure to provide an alternate pathway to release urine from Amelia’s body, and a Malone procedure to construct a new channel using Amelia’s appendix to release stool. Both procedures involved creating a valve mechanism outside Amelia’s abdomen through which a catheter is inserted. At the same time, Dr. Kaji expanded Amelia’s bladder with tissue grafts to increase its capacity.

“This approach doesn’t require the child to wear a permanent ostomy bag, or pouch, on the outside and gives more physical and social independence,” says Dr. Kaji. “Amelia can catheterize herself and it doesn’t hurt.”

“It doesn’t hurt if you put it in slowly,” explains Amelia of her catheter during her recent six-month follow-up visit with Dr. Kaji.
Amelia especially likes Dr. Kaji because “she’s always smiling,” and enjoys bringing Dr. Kaji’s favorite food – tater tots – to each visit. “And I love her clothes and shoes!” adds Amelia, who picks out a new outfit each time she sees Dr. Kaji. “You can always tell she’s coming – her fast little feet go clickity-clack!”

“Amelia is a very positive, bubbly child,” says
Dr. Kaji. “We’re glad we could get her back to 
being a kid.”

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Anthony Thomas

A MIRACLE FOR MUSIC MAN

The Thomases needed a miracle for their 2-year-old, Anthony. Days dragged like years by Anthony’s beside at Children’s Hospital Central California. “The first month I was so stressed,” says Timica Thomas, recalling her son’s prolonged Hospital stay. “He was not even moving,” she says. “For Anthony to be able to move again was not a promise we were given.”

Anthony was admitted to Children’s Hospital May 2009 with a traumatic injury to his cervical spine. “I left him at my cousin’s house that day and took my daughters shopping,” says Timica. “I wasn’t very far away, just a couple of blocks, when I got the call.” While playing video games, Anthony fell from the top of his cousin’s bunk bed, breaking the first two vertebrae in his neck.

Damage to the uppermost part of the spinal column can cause paralysis in the muscles of the chest wall and affect neurologic control of breathing. Anthony’s fall literally took his breath away. Doctors worked diligently, performing a lifesaving tracheostomy and fitting him with a ventilator and a halo to stabilize his neck while the vertebrae healed.
“Anthony’s injury was complicated because the damage to the spinal cord was so high on his cervical spine,” says Dr. Jennifer Crocker, medical director, Children’s pediatric rehabilitation center. “There were so many vital systems affected.”

A melody of hope

More than four weeks into his Hospital stay, Anthony’s head remained secured by the halo. Below his neck, nothing could move. However, his expressive eyes danced. “The nurses called him ‘Music Man’ because he babbled all the time,” says Timica.

The day Anthony’s parents watched their son move his feet, his healthcare team said spasms were common with spinal cord injuries and cautioned them not to have false hope. Anthony’s parents understood the effects of the neurological damage caused by their son’s fall, but they
continued to hope for the best outcome. They still expected their miracle.

“After Anthony was in the Hospital about a month and a half, he squeezed my hand,” says Anthony Thomas, Sr., Anthony’s dad. “I got the nurse and showed her, and all of a sudden everyone was in the room – doctors and nurses, everyone.” He smiled at the memory. “Anthony did it. He squeezed my hand.” The Thomases finally received their miracle.

 Tristan Yang, respiratory therapist at Children’s Home Care, met the Thomases a few weeks before Anthony’s discharge and began visiting their residence on a regular basis the day Anthony went home. Tristan helped them learn ventilator operation and tracheostomy care during Anthony’s inpatient stay, and coached on a weekly basis in their home for the first several months.

The harmony of home

“In the beginning when I showed up, Anthony would cry while I was there,” says Tristan. “I made him think of needles and procedures. But six months later he gave me his trust.” Tristan continues to visit, stopping in once a month and staying about an hour each time.
“Tristan is wonderful,” says Timica. “The time and quality that Home Care puts into what we need means so much to me. They’re the best. To be honest, I didn’t expect this. I thought I’d be left here on my own, but it’s not like that at all.” Children’s Home Care delivers the same high level of care Anthony received as an inpatient.

“Mom is a strong believer and has high hopes for her son,” says Tristan. “Big hopes bring a down life back up. Having that spirit, making Anthony believe he can walk again and hold a spoon, and being strong-minded, it makes a big difference.”

“We are grateful to have been able to work with such a terrific kid and family and continue to hope for more recovery,” says Dr. Crocker.

Christopher Reeve, famous for his role as Superman, received accolades for his heroic achievements after injuring his cervical spine. Children’s Hospital staff who enjoyed the honor of treating Anthony know another hero who overcame a devastating spinal cord injury. Here at Children’s we call him “Music Man.”

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Carson Genter

A GRATIFYING GIFT

Gift shopping keeps families on their toes in December. But Carson Genter lay flat on his back at Children’s Hospital Central California in late 2008. A 6-year-old at the time, Carson had contracted the H1N1 virus and pneumonia. “He spent about a week in the Hospital,” says Carson’s mother, Nicole Genter. He recovered and was discharged, but soon began passing out.

“We’ll investigate the cause,” says Dr. James Horspool, medical director, Charlie Mitchell Children’s Center. “Is there an infection, like meningitis? Are there structural malformations? Is the problem with the brain?”
An MRI revealed an abnormality of the brain known
as Chiari malformation.

“With Chiari malformation there’s a small descent of the cerebellar tonsils into the upper spine, compressing the brain and spinal cord,” says Dr. Meredith Woodward, a pediatric neurosurgeon at Children’s.
At the time of Carson’s MRI, the structural defect was not blocking the flow of cerebrospinal fluid, the clear liquid that surrounds and cushions the brain and spinal cord, and did not appear to be causing his
seizures. He began treatment for a seizure disorder.

Unwrapping a package of symptoms

Shortly after Carson turned 9, his health problems intensified. “He didn’t want to go out in the sun because the light hurt his eyes,” says Nicole. “He used to love being outside, but all of a sudden he would stay in his room and pull the blankets over his head.”

Carson’s speech slurred. He fell frequently, developed double vision and began vomiting. A visit to the gastroenterology practice at Children’s quickly changed course when dilated pupils indicated possible brain swelling. Carson was sent to neurosurgery and admitted.

“Sometimes Chiari malformation plugs up the flow of the spinal fluid like a cork in a bottle,” says Dr. Woodward. Carson required immediate surgery to relieve the pressure. Usually a one-time procedure, Chiari decompression surgery increases space between the cerebellum and the spinal column, and can cause immediate relief. “Often I’ll hear parents say, ‘He was already better in the recovery room.’”

Neurosurgeons at Children’s perform as many as 50 Chiari decompressions a year, and always watch for possible fluid buildup around the brain. “A lot of the kids can have a very rocky course after surgery,” says Dr. Woodward. “We do approximately one Chiari decompression per week and over the past year only five of those did not require a shunt.” Neurosurgeons insert a shunt when necessary to drain cerebrospinal fluid away from the brain to where it can be absorbed naturally by the body.

Carson’s recovery proved extremely difficult and symptoms indicated excess fluid on his brain. “Carson is autistic and doesn’t communicate his pain effectively,” says Nicole. “He would say, ‘Someone’s pushing on my head from the inside.’”

Receiving a welcome surprise

Three weeks after his Chiari decompression, Carson returned to surgery for a shunt. “There was so much going on and they literally caught everything,” says Nicole of the medical professionals treating her son. “They notice something’s wrong. They find out what it is. And they fix it.”

One outcome of Carson’s surgeries came as a complete – and welcome – surprise. Carson suffered daily seizures after recovering from H1N1. Medication reduced them to once every three days. “He was on two meds and still had seizures,” says Nicole. Routine MRIs never connected the seizures to the Chiari malformation. No one suspected otherwise. While an inpatient at Children’s, Carson stopped taking his meds. “We’ve been here two months and a week,” says Nicole, referring to her son’s extended Hospital stay. “And he hasn’t had a single seizure.”

In 2008 Carson spent part of the holiday season at Children’s Hospital Central California. He didn’t visit in December this time, but the Hospital enjoys giving the gift of improved health every month of the year. “When I brought him in here he was falling down, he was in pain, and he didn’t always know how old he was,” says Nicole. “Trying to say thank you is not enough. This place is a gift not just for the children, but for the parents. Children’s Hospital gave me back my son.”

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Corva McCollom

'MONSTER TUMOR REMOVED'

Jenny and Karl McCollom of Mariposa didn’t think about their 17-month-old daughter’s little pot belly. After all, lots of toddlers have a protruding tummy and slightly swayed back until their body begins to grow taller and more proportionate. A recent well-baby exam also didn’t reveal anything unusual.

But the McColloms soon learned their little girl had a monstrous tumor growing inside her abdomen – literally. In fact, it was the largest tumor of this type surgeons at Children’s Hospital Central California had seen in a young child, and was especially complicated due to its location and juxtaposition to major blood vessels. “It was quite shocking,” says Jenny.

When the nurse practitioner in Corva’s primary care physician’s office saw Corva and her mom by chance in town, she suggested they pay another visit. Corva’s arms and legs appeared thinner and her belly slightly larger.

So they did. An abnormal blood test and what felt like an internal organ pushing against Corva’s belly led the physician to refer Corva to Children’s where pediatric specialists determined she likely had a massive abdominal teratoma.

A what?

Characterizing the monster tumor

Meaning “monster tumor” in Greek, a teratoma is an encapsulated mass with tissue or organ components derived from all three embryonic germ layers – mesoderm, endoderm and ectoderm. The different specialized cells that make up the body come from one of these germ layers. Present at birth, teratomas may contain hair, teeth, bone and rarely, more complex parts such as eyes, torso, hands and feet. Fluid-filled cysts may reside within the teratoma’s capsule, sometimes producing a structure resembling a fetus.

Medical experts think teratomas may occur during the cell differentiation process when the embryo begins developing in the womb. The teratoma typically develops in the child’s ovary, testes, neck or torso, gradually becoming a recognizable mass.
In Corva’s case, the teratoma formed in the back of her abdominal cavity. It grew so large it pushed her pancreas from the back to the front of her tummy, making her pancreas vulnerable to injury.
“It wouldn’t have been good if she had a belly blow,” says Dr. Adam Gorra, a pediatric surgeon at Children’s who surgically removed Corva’s tumor with Dr. Michael Allshouse, Children’s medical director, pediatric surgery and trauma.

“Both doctors explained everything without sugarcoating anything,” says Jenny. “They inspired confidence.”
In case the teratoma was cancerous, the McColloms met beforehand with Dr. Vonda Crouse, a long-time pediatric oncologist at Children’s. Of the 120 new cancer patients seen each year at Children’s, only about one involves a cancerous teratoma (teratocarcinoma).

Eliminating the unusually large mass

The pediatric surgeons removed the entire tumor. The size of an eggplant, the mass weighed just over a pound, representing nearly 10 percent of Corva’s tiny body.

“It was the largest tumor I’ve seen in a prepubescent child in proportion to their size,” says Dr. Allshouse, who has treated about 500 tumors during his more than 25-year career.

“Corva’s tumor wrapped 270 degrees around the abdominal aorta, the largest and most vital blood vessel in the body,” adds Dr. Gorra. “We were thrilled we got the tumor out without sacrificing important organs.”

As teratomas do, the mass contained multiple types of tissue, including brain, fat, cartilage and more. Thankfully, the tumor was not malignant.
During the four-hour surgery, nurses’ regular updates especially comforted the McColloms. Halfway through, they were told the procedure continued to go well and “The doctors have a surprise for you!”

“We couldn’t imagine what that meant!” recalls Jenny, smiling.

Dr. Allshouse and Dr. Gorra removed a small triangular-shaped tooth from Corva’s tumor. “We show it to everybody,” chuckles Jenny.

If left untreated, teratomas may become so large they burst, or put undue pressure on organs, arteries, vessels, etc. Fortunately, due to an astute nurse practitioner, concerned family and pediatric experts at Children’s Hospital, Corva’s life as a curious toddler continues, including learning to talk and seeing the world with wondrous eyes.

“We’re so happy that ‘monster’ is out!” says Jenny. “Every time I drive by Children’s I think, ‘Thank goodness that’s there!’”

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Jace Williams

A NEW YEAR'S CHALLENGE

For the Williams family, greeting the coming year proved challenging. “We’re not really into staying up late on New Year’s Eve,” says Rose Williams. “I went to bed before midnight.” She and her husband, Raymond, live in Madera with their children, Isaiah, Ray and Jace. Their youngest felt ill leading up to Jan. 1, 2011. Jace’s constant fever, lethargy and loss of appetite concerned his parents. “He’s usually the biggest eater of our three boys,” says Rose of her 6-year-old.

Raymond took Jace to Kaiser Permanente Hospital early in the day New Year’s Eve. His fever climbed to 103. “The doctor didn’t really know what it was,” says Raymond. “She ordered blood tests and said we’d get a call later.”

Rose rotated doses of acetaminophen and ibuprofen and gave Jace cold compresses and popsicles, but his fever would not break. They went to sleep suspecting the flu.

Running on empty

“My sister called right at midnight to say Happy New Year and she woke me up,” says Rose. She drifted immediately back to sleep and did not realize 90 minutes had passed when the phone rang a second time. “I thought it was someone else calling to say Happy New Year,” she says. “But when I saw it was 1:30 in the morning and the caller ID said ‘Kaiser’ I knew something was wrong.”

Instantly awake, Rose learned her son’s hemoglobin was dangerously low. “They asked me if I could get Jace to an emergency room within 45 minutes.” Rose buckled her sleepy son into the car for the 35-minute drive from their Madera home to the hospital in Fresno. As soon as the motor was running, she realized her tank was empty. “As I stood there putting gas in my car, all I could think about was how my mom always told me not to let my car go below a quarter tank because you never know when you’ll have an emergency,” she says. “I wasted 10 minutes pumping gas.”

With her tank refueled, Rose sped down the highway near 2 a.m. on a night notorious for drunk driving. “I actually wanted to get pulled over by the sheriff so he could escort me.” She made the trip in record time. “I went straight to Kaiser ER and they were ready for him.”

Jace’s fever spiked to 105.8 degrees and his hemoglobin was 3.1. An adult with hemoglobin that low would suffer heart failure. The sky was still black with night when Kaiser arranged a medical transport to Children’s Hospital Central California.

“I knew when they were going to Children’s that it was a better hospital for children,” says Raymond. “That’s what they do, they take care of kids.” By 6 a.m. the Williamses received the heartbreaking diagnosis. Jace had a form of leukemia found in only 4 percent of all pediatric leukemia cases.

“The disease is very rare, so the treatment plan is more of a challenge,” says Dr. Ruetima Titapiwatanakun, a pediatric hematologist/oncologist at Children’s Hospital. She immediately began inpatient chemotherapy treatments that lasted 28 days.

Refueled with hope

“They have such a genuine love for what they do and for these kids,” Rose says of her son’s healthcare team. “You can just see it, and you see a difference from adult medicine.”
After discharge, Jace’s cancer went into remission and he began weekly visits to the Craycroft Cancer Center for outpatient chemotherapy. He will continue receiving monthly treatments at the clinic for approximately two years.

“Jace’s health is almost a 180-degree turnaround,” says Raymond. “He keeps up with his brothers. He’s right there on their shirttails, not missing a beat.”

Rose credits more than Jace’s energy for his improved health. “Definitely prayer and faith are our biggest advantage and our strongest confidence,” she says. “It doesn’t matter what you drive. It’s who you love that matters.” Rose’s love for family keeps her gas tank from running on empty.